Re-building relationships after a spinal cord injury: experiences of family caregivers and care recipients.

BACKGROUND: Following spinal cord injury (SCI), family members are often called upon to undertake the caregiving role. This change in the nature of the relationship between the individuals with SCI and their families can lead to emotional, psychological, and relationship challenges. There is limited research on how individuals with SCI and their family caregivers adapt to their new lives post-injury, or on which dyadic coping strategies are used to maintain relationships. Thus, the objectives of this study were to obtain an in-depth understanding of 1) the experiences and challenges within a caregiving relationship post-SCI among spouses, as well as parents and adult children; and 2) the coping strategies used by caregivers and care recipients to maintain/rebuild their relationships. METHODS: A qualitative descriptive approach with an exploratory design was used. Semi-structured face-to-face and telephone interviews were conducted. Thematic analysis was used to identify key themes arising from individuals with SCI's (n = 19) and their family caregivers' (n = 15) experiences. RESULTS: Individuals with SCI and family caregivers spoke in-depth and openly about their experiences and challenges post-injury, with two emerging themes (including subsequent sub-themes). The first theme of deterioration of relationship, which reflects the challenges experienced/factors that contributed to disintegration in a relationship post-injury, included: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. The second theme of re-building/maintaining the relationship, which reflects the strategies used by dyads to adjust to the changes within the relationship brought upon by the injury, included: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal. CONCLUSIONS: These findings should alert healthcare professionals and peer support groups as to the need for possible education and training (e.g., coping strategies, communication skills training) as well as counseling prior to discharge to assist individuals with SCI and family caregivers with adaptation to a new life post-injury.

The role of oncology nurse navigators in enhancing patient empowerment within the diagnostic phase for adult patients with lung cancer.

OBJECTIVE: The objective of this study was to explore the role of oncology nurse navigators (ONN) in enhancing patient empowerment for adult patients with lung cancer during the diagnostic phase of cancer care. DESIGN: A qualitative descriptive design was used. Data were gathered through individual patient interviews and a focus group with the ONNs. RESULTS: Eight individuals participated: four adult patients with lung cancer and four oncology nurse navigators. Themes regarding the clinical functions of the ONN role in enhancing patient empowerment were identified: patient advocate, educational support, personalized symptom management, and resource navigation. CONCLUSION: ONNs are in a key position to adapt their practice to the emotional and supportive care needs required to promote patient and family empowerment.

The role of oncology nurse navigators in facilitating continuity of care within the diagnostic phase for adult patients with lung cancer.

OBJECTIVE: The objective of this study was to explore the role of oncology nurse navigators (ONN) in facilitating continuity of care for adult lung cancer patients during the diagnostic phase of cancer care. DESIGN: A phenomenological approach was used and involved semi-structured patient interviews and an oncology nurse navigators' focus group. RESULTS: Eight individuals participated, including four adult patients with lung cancer and four oncology nurse navigators. Themes regarding the organizational functions of the ONN role in facilitating continuity of care were identified: patient-focused care, needs assessments, shared decision-making, accessibility, and eliminating barriers. CONCLUSION: Awareness of the organizational functions of the ONN role could be used to create core areas of practice within nursing training modules to provide consistent and patient-centred continuity of care.

Development of employment indicators to advance the quality of spinal cord injury rehabilitation care: SCI-High Project.

CONTEXT: Employment and Return to Work (RTW) rates following spinal cord injury/disease (SCI/D) are low due to individual and impairments characteristics, secondary health conditions, social and environmental barriers, prior work experience, workplace supports and resources, and physical or psychosocial work demands. To improve RTW, the SCI-High Project team developed a set of Employment structure, process, and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. METHODS: A pan-Canadian Working Group of diverse stakeholders: (1) defined the Employment construct; (2) conducted a systematic search of available outcomes measures; (3) constructed a Driver diagram summarizing factors associated with employment. Subsequent facilitated meetings allowed for the creation of structure and process indicators, and the selection of outcome indicators. RESULTS: The structure indicator is the proportion of SCI/D rehabilitation programs with an employment resource center. The process indicator is the proportion of SCI/D rehabilitation inpatients who receive an employment assessment during inpatient rehabilitation. The intermediary and final outcome measures are the Readiness for Return-to-Work Scale (RRTW) and Work Productivity and Activity Impairment (WPAI). Scale A of the RRTW for those who are unemployed and Scale B of RRTW and WPAI will be used for those who are employed. CONCLUSION: This framework of Employment indicators intends to support the RTW needs of persons with SCI/D by ensuring that rehabilitation professionals provide opportunities to explore RTW within the first 18 months after rehab admission. Increased employment rates have the potential to enhance the wellbeing, health, and longevity of individuals with SCI/D.

Development of community participation indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

Community participation following spinal cord injury/disease (SCI/D) can be challenging due to associated primary impairments and secondary health conditions as well as difficulties navigating both the built and social-emotional environment. To improve the quality of SCI/D rehabilitation care to optimize community participation, the SCI-High Project developed a set of structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission.A pan-Canadian Working Group of diverse stakeholders: (1) defined the community participation construct; (2) conducted a systematic review of available outcomes and their psychometric properties; (3) constructed a Driver diagram summarizing available evidence associated with community participation; and (4) prepared a process map. Facilitated meetings allowed selection and review of a set of structure, process and outcome indicators.The structure indicator is the proportion of SCI/D rehabilitation programs with availability of transition living setting/independent living unit. The process indicators are the proportion of SCI/D rehabilitation inpatients who experienced: (a) a therapeutic community outing prior to rehabilitation discharge; and, (b) those who received a pass to go home for the weekend. The intermediary and final outcome measures are the Moorong Self-Efficacy Scale and the Reintegration to Normal Living Index.The proposed indicators have the potential to inform whether inpatient rehabilitation for persons with SCI/D can improve self-efficacy and lead to high levels of community participation post-rehabilitation discharge.

Conception and development of Self-Management indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

CONTEXT: Although self-management is linked to reduced secondary health complications (SHCs) and enhanced overall quality of life post-spinal cord injury or disease (SCI/D), it is poorly integrated into the current rehabilitation process. Promoting self-management and assuring equity in care delivery is critical. Herein, we describe the selection of Self-Management structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. METHODS: Experts in self-management across Canada completed the following tasks: (1) defined the Self-Management construct; (2) conducted a systematic search of available outcomes and their psychometric properties; and (3) created a Driver diagram summarizing available evidence related to Self-Management. Facilitated meetings allowed development and selection following rapid-cycle evaluations of proposed structure, process and outcome indicators. RESULTS: The structure indicator is the proportion of staff with appropriate education and training in self-management principles. The process indicator is the proportion of SCI/D inpatients who have received a self-management assessment related to specific patient self-management goal(s) within 30 days of admission. The outcome indicator is the Skill and Technique Acquisition, and Self-Monitoring and Insight subscores of the modified Health Education Impact Questionnaire. CONCLUSION: The structure indicator will heighten awareness among administrators and policy makers regarding the need to provide staff with ongoing training related to promoting self-management skill acquisition. Successful implementation of the Self-Management process and outcome indicators will promote self-management education and skill acquisition as a rehabilitation priority, allow for personalization of skills related to the individual's self-management goal(s), and empower individuals with SCI/D to manage their health and daily activities while successfully integrating into the community.

Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients.

Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community.Methods: A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (n = 19) and their family members' (n = 16) experiences.Results: The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness.Conclusions: The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators.Implications for RehabilitationFamily caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community.The potential negative effects of caregiving could threaten the sustainability of these critical supports.Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role.This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role.

Identifying Required Skills to Enhance Family Caregiver Competency in Caring for Individuals With Spinal Cord Injury Living in the Community.

Background: Due to the earlier discharge of individuals with spinal cord injury (SCI), family caregivers are often left with limited time for learning caregiving skills, and they usually feel unprepared to undertake the caregiver role. Objective: Considering the key role of family caregivers in maintaining the overall health and well-being of the individual with SCI, the objective of this study was to determine the breadth of skills needed by family caregivers to enhance their competency in caring for individuals with SCI living in the community. Methods: A qualitative descriptive approach was used with semi-structured interviews. Thematic analysis was used to determine key themes arising from the experiences of individuals with SCI (n= 19) and their family members (n = 15). Results: Twenty-nine SCI family caregiving skills were identified and grouped into six caregiving processes signifying the multiple dimensions of the SCI caregiving role. These include monitoring and managing physical health and secondary health conditions, providing for psychosocial needs, decision making, time management, being flexible, and navigating the health and social services system. Conclusion: The current study demonstrated that development of multiple caregiving skills is crucial to enhance family members' competency in caregiving. These findings should further alert health care professionals that assessment of caregiving skills at regular intervals is necessary to help caregivers achieve mastery in situations where they are facing caregiving difficulties. Future programs need to be designed to include the skills that family caregivers need and use in real-life caregiving situations.

Conception and development of Sexual Health indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

Context: Although spinal cord injury or disease (SCI/D) results in complex biological and psychosocial impairments that adversely impact an individual's overall quality of sexual life, sexual health is poorly integrated into the current rehabilitation processes. Therefore, it is vital to promote sexual health as a rehabilitation priority. Herein, we describe the selection of Sexual Health structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. Methods: Experts in sexual health and the SCI-High team identified key factors that influence the sexual health outcomes of rehabilitation interventions to inform Driver diagram development. This diagram informed the selection and development of indicators to promote a permissive environment for discussion of sexual health issues among regulated health care professionals (HCPs). A review of literature and psychometric properties of measurement tools facilitated final indicators selection. Results: The structure indicator is the proportion of rehabilitation HCPs who have completed annual preliminary sexual health training. The process indicator is the proportion of SCI/D inpatients that have a documented introduction to available local sexual health resources. The outcome indicator is a sexual health patient questionnaire used to assess sexual health patient outcomes and sexual health information/educational needs. Rapid-cycle piloting verified that the indicator tools developed are feasible for implementation. Conclusion: Successful implementation of the Sexual Health structure, process and outcome indicators will promote a permissive environment to enable open discussion, and lead to provision of equitable and optimal care related to sexual health following SCI/D. This will ultimately advance sexual health rehabilitation across the nation.

Methods for development of structure, process and outcome indicators for prioritized spinal cord injury rehabilitation Domains: SCI-High Project.

Background: High-quality rehabilitation care following spinal cord injury or disease (SCI/D) is critical for optimizing neurorecovery and long-term health outcomes. This manuscript describes the methods used for developing, refining, and implementing a framework of structure, process, and outcome indicators that reflect high-quality rehabilitation among adults with SCI/D in Canada. Methods: This quality improvement initiative was comprised of the following processes: (1) prioritization of care Domains by key stakeholders (scientists, clinicians, therapists, patients and stakeholder organizations); (2) assembly of 11 Domain-specific Working Groups including 69 content experts; (3) conduct of literature searches, guideline and best practice reviews, and outcome synthesis by the Project Team; (4) refinement of Domain aim and construct definitions; (5) conduct of cause and effect analysis using Driver diagrams; (6) selection and development of structure, process and outcome indicators; (7) piloting and feasibility analysis of indicators and associated evaluation tools; and, (8) dissemination of the proposed indicators. Result: The Project Team established aims, constructs and related structure, process, and outcome indicators to facilitate uniform measurement and benchmarking across 11 Domains of rehabilitation, at admission and for 18 months thereafter, among adult Canadians by 2020. Conclusion: These processes led to the selection of a feasible set of indicators that once implemented should ensure that adults with SCI/D receive timely, safe, and effective rehabilitation services. These indicators can be used to assess health system performance, monitor the quality of care within and across rehabilitation settings, and evaluate the rehabilitation outcomes of the population to ultimately enhance healthcare quality and equity.

Development of Emotional Well-Being indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

Context: Emotional Well-Being (EWB) post-spinal cord injury or disease (SCI/D) is a critical aspect of adjustment to disability. Advancing care and assuring equity in care delivery within this rehabilitation care domain is essential. Herein, we describe the selection of EWB structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. Methods: A pan-Canadian Working Group completed the following tasks: (1) defined the EWB construct; (2) conducted a systematic review of available outcomes and their psychometric properties; (3) constructed a Driver diagram summarizing available evidence associated with EWB; and, (4) prepared a process map. Facilitated meetings allowed selection and review of feedback following rapid-cycle evaluations of proposed structure, process and outcome indicators. Results: The structure indicator is the proportion of staff with appropriate education and training in EWB and access to experts and resources. The process indicator is the proportion of SCI/D patients who were screened for depression and anxiety symptoms at rehabilitation admission and rehabilitation discharge. The intermediary outcome is the proportion of SCI/D patients at risk for depression or anxiety at rehabilitation discharge based on screening symptom scores. The final outcomes are: (a) proportion of individuals at risk for depression or anxiety based on screening symptom scores; and (b) proportion of individuals who received referral for EWB services or intervention. Conclusion: The proposed indicators have a low administrative burden and will ensure feasibility of screening for depression and anxiety at important transition points for individuals with SCI/D. We anticipate that the current structures have inadequate resources for at-risk individuals identified during the screening process.